A care home where dying is just as important as living: an interview with Sue Coleman

I love camping grounds, especially camping ground kitchens!

In winter 2015 I was having a spell of time in Dunedin, parked up in Nellie, my house truck, in the camping ground by the beach at St Kilda. It was in the kitchen there that I met Pam, a very happy staff member of a small nursing home much further up the island. We got talking, and as she spoke of this care home she loved so much I asked if I could go and get my voice recorder. On my return Pam was unsure about being recorded, but said she would put me in touch with her very special boss, the owner and manager of the little nursing home. Several weeks later Sue Coleman and I met via Skype.

 

 

Thank you so much, Sue, this is a privilege to speak with you. As you know, I met Pam, one of your staff – one of your very happy staff, I have to say – in the kitchen at the camping ground at St Kilda, in Dunedin.

I want to speak with you about how you do dying in the nursing home. I’m particularly interested in things like: What do you see are the needs of someone who is dying? How do you support them? What might the needs of their family be, and other residents, and staff? And similarly, after death. . .  So, I’m just happy for you to speak to that.

 

 

Righty oh. After I spoke with you the other day, I actually talked with two of my senior staff members and it was very interesting. I went out and I said, “How do we do death and dying? And why do we do it so well?” I’m actually pleased I spoke with them because I have got three pages of notes.

 

 

Wow, that means they’re really in tune with it, doesn’t it?

 

 

That’s right. So I’ll just go through what the three of us spoke about the other day. The main thing that came through – they both said it to me separately, “We care for the residents how we would like to be cared for ourselves, or how we would like our parents to have been cared for”, so I think that’s very important to us, and it’s what we have in the back of our minds the whole time. And the final thing they said to me is, “Death is just as important as living”.

 

 

Wonderful.

 

 

And I know that no matter what staff members are around, when one of our residents is dying, they all put in extra cares, and extra time, and just want to be here. They really come to the fore to care for, not just the person who is dying, but their family as well. We extend it out to the family members.

 

We have got a double room at the rest home. If we can, we try and put the dying person in there, so that there’s another bed in there that any family member can stay in. But of course, sometimes the person doesn’t want to move out of the room that they’ve been living in for however many years. So if we’ve got a spare bed we always make it up and offer it to any family member to stay at any time.

 

We don’t have any set visiting hours; we just let family come and go as it suits them. We actually had a lady quite a few years ago who came in here for palliative care. They were an elderly couple, and her family lived quite some hours away, and apparently a thing she and her husband had done most evenings is that when they went to bed he would read to her, and then they would go off to sleep. So I said to him, “It doesn’t have to be any different; just come in and read whenever you want to”. So he would actually go to bed, and then he’d wake up at about twelve or one o’clock in the morning, come in and read to her for a couple of hours and then go back home. So we don’t want anything here to be different, if possible, from what they’ve had at home.

 

It’s just all the basic cares: we wash them two or three times a day; change their nightwear each day, or twice a day; change the sheets and bedding – that’s fresh every day; tidy the room and put away all the unnecessary clutter. Mouth cares are very important to us, as well as keeping their hands, feet, legs, arms, all their skin nicely moisturised, so therefore we’re giving them a massage after they’ve had their wash. We also encourage family to massage hands and feet, because sometimes family members just sit there and don’t know what to do. They may not have been a close family, or a touchy-feely family, so this is a good way for them to offer something to their parent.

 

Now a funny thing with the mouth cares – a lot of elderly have perhaps had a whisky every night, or a glass of wine, and we encourage that to continue, and when it comes to the time when they don’t want to eat any more, if the family agree, we actually use the sponge for the mouth care and continue dipping that into the whisky or the wine and just let them suck on it.

 

 

That’s lovely. What delightful continuity.

 

 

And we say to the family, usually it’s daughters, “Have a wine or a whisky with Mum or Dad at the same time. Do what you’ve done at home”. So even if they’re not eating, they’re still getting their little tipple. We involve and encourage family members to stay; we offer beds, as I said, give them a meal, cups of tea. We invite them to come and go and use our kitchen as they want to.

 

We make sure the person who is dying is never left alone. If a family member can’t be there, a staff member will pop in and out all the time, or sit in there. And this is where the staff come to the fore. They’ll say, “Oh, so and so hasn’t got any family here today. I’ll come round and sit here”. The odd time, if they’ve been particularly good friends with another resident, we’ll just say to that resident, “Do you want to go and just sit for five or ten minutes?” or they will notice themselves that there’s nobody in there and just ask can they go in. We always encourage that.

 

We never pull the curtains except at night. We leave the bedroom with natural lighting and fresh air. It’s not closed up and made to feel, “Oh, somebody’s dying”. It’s just life carries on as usual, and so often they have remarked on the scenery outside. We can see hills; we’ve got beautiful gardens. Naturally they can’t see the gardens when they’re in bed, but they can still see the sky. I think it’s important not to close that out.

 

We play a bit of background music if it’s been important to them. Whatever’s been important to them in their life, or in the time that we’ve got to know them living here, we will make sure that that’s carried on, even if they are dying. We will have incense going, or a candle, we put fresh flowers in every couple of days – anything to keep everyone nice and calm and peaceful and comfortable, and lots of reassurance for them.

 

We involve religion if that’s their choice and make sure ministers have been in to see them, or anyone that they’ve been close to in their church. The other day with a family we had the singing group come in. There were three ladies and they sat there for about an hour, quietly singing to this person. It was wonderful to listen to. So we know that that’s important and we encourage it to happen.

 

One thing we do discourage… so often when someone is dying you’ll find people from the church come out of the woodwork and want to visit. And they may never have visited in the whole time the person has lived here, so I just sum it up as the situation arises, and sometimes I say, “No, you can’t come, just family only”, because I think, “Why didn’t you come and visit them or take them out when they were well? Why come right at the end and think that you’re doing a good Christian deed?”

 

 

Good for you. Not an easy choice at times, I imagine, but good on you.

 

 

As I said, when family are sitting there, we encourage them to give a hand or foot massage, talk to them, read the bible, read a book, just talk. But then again, also silent times are very important – just being there.

 

I tell the family that hearing is the last sense to go, so just keep talking – and also remember that they’ll be able to hear whatever you’re talking about to other members of the family!

 

The look of a person is important to us, so we always make sure their hair is washed and clean. If necessary one of our staff members can give haircuts, even when they’re in bed and dying, trimming beards, trimming eyebrows, ears, making sure ladies’ chins and lips are hair-free – all of those little things are very important – putting on lipstick, talcum powder and nail polish if that’s what they’ve worn all their life.

 

We do try very hard to carry out any wishes that we know of. We had a lady who’d lived here for a few weeks, and she suddenly decided that she wanted to see the sea for the last time. Gore Bay is about eight kilometers away, and she also lived around the road from Gore Bay, and she decided that she wanted to go home to die. I don’t know if it was just luck, or good management, or instinct, which I believe in, but I decided, “Right, today I will arrange this with two of the St John Ambulance volunteers”. They came and collected her and they parked up on a hill, opened the back door so she could watch the sea, took her on home, and her husband and family were very happy to have her at home, and then she died peacefully that night. We always remember that. We just think it’s wonderful that she got to see the sea and then go home, even though she’d lived here for many weeks.

 

What else? We’ve got to put up with all the family dynamics, but we put up with that whether residents are living or dying – who’s talking to who and who’s not talking to who. Everyone has their own ideas, but we just listen to families and reassure them, and support them and tell them there’s no right and wrong way of dying. Just remember it’s your parent, and do what your parent would want.

 

When a new resident comes in, we now try and talk with them about their funeral wishes because so often family won’t approach the subject. We try to have all that in place so that I can say to family, “We talked about this, and this is what they would like”, right down to hymns, songs, funeral flowers – their favourite flower and colour – the family just don’t want to talk about it.

 

 

Sue, it’s brilliant. I’m so pleased.

 

 

We have two cats at the rest home. This has become a wee bit of a joke. One of the cats seems to sense when someone is unwell and will spend days and days sleeping on the bed of a dying person, and then when there’s nobody dying all the residents say, “Oh Alby or Chloe’s on my bed; I hope I’m not dying”. So we can joke about death too. They all like the cat on their bed, or sitting on their knee, but it’s amazing what cats do sense. I personally have got a little dog, so if a person has always had a dog, or likes dogs, I make sure our wee dog comes in frequently to jump up on the bed, or I’ll hold onto the dog so they can stroke her.

 

We’ve always used the Liverpool Care Pathway, though we’re not allowed to call it that now – it’s the New Zealand End-of-life Care, so we still follow that. It’s excellent for putting things in place ahead of time, and having conversations with family.

 

Being in a rural area we don’t have any after-hours cover by our local GP so it’s really important to spend time with our GP on a Friday to think ahead of time – what might we require during the weekend, if we have somebody dying over a weekend, or who’s not so well.

 

So I think that’s all we do leading up to death.

 

 

Can I just backtrack onto the last little piece? Do you alert the doctor? Is that what you mean?

 

 

Yes, and maybe we need to have extra medication in place over weekends, because we wouldn’t be able to get anything until the Monday. We can go three days without being able to access any medication. We work in closely with the GP, planning ahead with different signs or symptoms, or things that may happen.

 

 

So your nearest town, is it Cheviot?

 

 

Yes, Cheviot is a little rural town, but we don’t have a pharmacy here. We’ve got a depot, so our medication has to come up from Christchurch, overnight by courier. We have to have a little supply on hand.

 

Once a resident has died, we wash and dress them and put clean linen on the bed, and we encourage family to help us do that if they want to. If they don’t want to, that’s fine. And we always have a clean white sheet over them and a fresh flower is placed on their chest. We have a candle burning in their room once they’ve died, and the windows are open. For some reason I always liked the Maori idea of your soul flying out the window – I think that’s wonderful. We do pull the curtains slightly, but they’re not closed completely. I still want natural light and fresh air coming in. I do know years ago some staff would pull the curtains tight and just want the room looking dark. I don’t want that and neither do our present staff.

 

We make sure the rooms are nice and tidy, and a good way of teaching a new or younger staff member is that one of the senior staff members will do the laying out and ask one of the younger ones to come in so we can teach them and reassure them that it’s all part of living and nothing to be scared about.

 

We go and tell the other residents, and they are given the opportunity to go and say goodbye as well.

 

 

Super.

 

 

They respect that family, naturally enough, have first rights, but if there’s no family member there, the residents that want to will then go and say goodbye.

 

I text all the staff and tell them, so that they also have the opportunity to come in and say goodbye. Along with any close friends that that person may have had out in the community.

 

 

That’s so lovely, Sue; so much caring for everybody. I’m really, really touched.

 

 

Well, we’ve looked after them. We’re just one big family here.

 

We put up a photo in the main entrance for a week, and we have a candle burning next to that, and we have a flag flying at half-mast outside, so all the community knows when somebody’s died!

 

When the funeral director comes, if any residents or family or staff are here, we don’t mind if they walk out to the car with the deceased person. Some of the residents like to. You know, there are some very strong friendships made here. We never pull the curtains in the lounge when a person is being put into the hearse, to block the view. One or two funeral directors have said, “Do you want to go and pull the curtains in the lounge?” I just say, “No. No. We know what’s happening and it’s all part of life”.

 

 

Oh, this is so refreshing! It’s fantastic what you’re doing!

 

 

If a resident is upset by it and doesn’t want to watch, they’re given the opportunity to go to their room. I’ll just let them know when the hearse is arriving and they can either stay there, say farewell, or go to their room.

 

The other day one of our rest home cats followed the person out and was going to jump up into the hearse. The woman had a large family and they were all standing either side, and some of the residents were out there as well, and the cat, and it was really weird, because when the car drove away the cat slowly walked behind the car, and then sat in the gutter as the car turned into the street, and just watched the hearse go. By this stage the family are all sitting outside in our courtyard area. The cat turned around and walked to each family member and rubbed up against them. It was incredible.

 

 

Oh my goodness.

 

 

And that cat had spent two or three days on her bed before that. So there are special little things like that that you always remember that make it just a little bit more personal.

 

Of course staff have to carry on with work immediately after someone has died, immediately after they’ve been taken away. You still have to carry on, no matter how deeply it has affected you. A few years ago we had a real run of deaths, about five in three months. After about the fourth one I went and spoke with all the residents and just said, “We are affected by these deaths. You may not notice any emotion on us, and you may think we’re just carrying on unaffected. We have to; we have to carry on caring for you, but you have to know that deep inside these deaths have affected us too”. So I think keeping those lines of communication open with the residents who remain here, letting them know that it does affect us too – that’s important. They were quite reassured that we’re not all hard old biddies.

 

 

Yes, and they’ll be thinking in terms of their own deaths and wondering, “Will my death matter to you?”

 

 

Yes, so we reassure them that everybody matters to us.

 

One or two residents have actually said to us, following a death, that they feel very reassured about the way the staff care for somebody here, so it’s good to get that feedback from them, too.

 

Staff can attend the funeral – that doesn’t worry me at all. It’s their choice. I try to go, being the owner, and having been responsible for the resident all that time but sometimes I am not able to.

 

At the next staff meeting we will have a debrief about the death, or sooner if need be, just to talk about the person, share any stories that we have, any thoughts and emotions, have a laugh, and most importantly, just to respect each other’s feelings because we’re all different. Some people may not have liked that person; others could have become very close to that person. Of course all the staff know that there’s no talking outside of the building, so we do have that debrief.

 

 

 

It’s like your own little mini funeral in a sense. It fulfils some of the same functions.

 

 

We have a book where any staff can write their thoughts about a resident; it’s just kept in the office. Someone may not want to talk, but might write something down when they feel ready to.

 

During the resident’s time of living here, one of our activities is to make up a scrapbook for each of them. We put lots of photos of their life, and all the things they’ve done here, like trips out and everyday things, so we’ve got that to give to the family when somebody has passed away. At times it’s a real surprise to families, because if the resident has a wee bit of dementia they can’t remember what they’ve done all week, so we’ve got photos to prove, “Yes, you did go away on that trip”, and that week Mum said she hadn’t been anywhere. So it can be a surprise to a family to see what they have done while they’ve been here.

 

Of course some deaths affect the staff more than others. Some deaths are a relief to the person, and to the staff, depending on what’s been wrong. We’ve got one staff member who has a resident’s ashes in her garden, because he built the house that she now lives in. He had no immediate family and was just so delighted when she bought this house. He was able to give her all the plans, and photos of when he was building it. They became very close. His extended family were absolutely delighted when she said, “Would you like to bury his ashes in the garden of the house that he built”. And they’ve been made welcome to visit any time. She has planted a special tree for him and placed a garden seat there for family to sit on and for her to reflect on life – have a drink in memory of him, too.

 

We cared for another staff member here – that was palliative care. She died here, and her ashes are in our garden. We bought a weeping cherry tree, because her two sons didn’t really know what to do with her ashes. One lives in Australia and the other lives somewhere else in the South Island. They weren’t a close family so they agreed to have her ashes here. She’d been working here for six or seven years and we were really all the family she had.

 

I’ve been asked to do funeral services here at the rest home, and we’ve also had memorial services, especially if someone has lived here a number of years and the residents can’t go to the funeral. It’s easier to have a little memorial service here, so they see that we care, and it’s closure for the residents.

 

In our dining room we have a photo board, so at Christmas time – I leave it up for about eight weeks – I put up a photo of all those who’ve passed away during the year. And another thing we’ve done in activities… our beaches have quite a few flat stones, so Elysia painted all the stones quite bright colours, and in white put each resident’s name on, so we’ve got them sitting in a garden at our main entrance. So there are past and present residents’ names all out in the garden.

 

That’s really about it.

 

 

That’s amazing. You’ve given so much detail about the many ways in which dying matters in your nursing home, Sue.

I have one other question, and that is what’s your protocol around clearing the room after somebody has died?

 

 

After somebody has passed away we bless the room and wash it. Sometimes I will get it re-painted, and we always take any pictures out and hang different ones so that it’s no longer that person’s room, it’s a completely new person’s room.

 

The last thing I’ve written down is no matter who the resident is, or how we feel about them, they will always be cared for in exactly the same way, with the same dignity and respect from all the staff.

 

Death to us is just as important as living.

 

 

Well I am so, so glad that I happened on Pam and she led me to you, because what you’ve told me about your rest home is really special. Some of the big, expensive homes don’t seem to know how to do death, which is why I find this so moving, in terms of your care and respect for absolutely everybody involved.

 

 

As a small place we struggle; we can’t compete with those big ones, but I know, and the staff know, that care here is 100% better than what you get in a big place. Those places might look good – have all the movie theatres, swimming pools, cafés etc but they are only bricks and mortar. You might have all the flashest things, but it’s what actually happens inside that building that makes the place.

 

 

I could not agree more, Sue. Thank you for speaking with me, and for the exquisite example you give of how care can be, particularly in dying.

 

 

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On 31 October 2020 Sue added:  I have read my interview with you and find it is still all relevant- we do death and dying exactly the same way after all these years except the Liverpool Care Pathway is no longer in use in NZ. 

 

We have wonderful support from the Nurse Maude Palliative Care service based in Christchurch. They appoint a Palliative Care Nurse Specialist to Aged Care facilities and Vicki is a very valuable colleague, offering regular support and education – my staff love her! 

 

On 10 November 2020 Sue told me: Cheviot Rest Home won the 2020 Aged Advisor award for Best Aged Care Facility NZ under 40 beds for the 5th consecutive year. 

This award is decided by reviews sent to Aged Advisor, from residents, their families, friends and visitors plus staff.  

I feel this award reflects the high standard of care we continually offer